I had a colleague, during my teaching career, who was an African-American lady about 10 years younger than I. We went to lunch one day and she stressed the importance of teaching her son — then 2 — about the civil rights movement, which even she was too young to have lived through, much less remember. She said her mom — who also was an educator — made it her business to teach Oni and her sister about "the struggles" so she always would appreciate that the opportunities she enjoyed were not easily come by.
As a child, I learned about the Holocaust, which was still fresh in everybody's minds, especially since I was born only 10 years after the end of World War II and the liberation of the Nazi concentration camps. There were people in my neighborhood, many of whom were classmates' parents, who had numbers on their forearms from the "camps."
What does this have to do with disabilities? A lot. When I just hung out in groups of ALS patients, we all had one thing in common: the same disease. There are different forms of ALS, sure. Some of us lost our speech, while some of us can speak; I still have use of my hands while some patients don't, and have to use eyegaze machines to talk, and different switches to operate their wheelchairs, like head controls or even eye controls. I am blessed with a slow progression, while other patients' symptoms progress at a faster rate. But we all have one fundamental thing in common: We had a life before ALS. Although we were diagnosed at different ages, and an increasing number of young people as young as 18 to 30 are being diagnosed, we all had able-bodied "normal" childhoods, and most of us had several years of adulthood, as well. Most of us dated, attended our proms, got married and had children, and had relationships with our families without thinking about how or why.
But as I mix in the larger disabled community — most often as a consumer board member of Concepts of Independence — I become acquainted with people who are disabled in a hundred different ways. The one difference that stands out is the dichotomy between those of us with acquired disabilities (like multiple sclerosis, ALS or SCI, or spinal cord injuries), and those with disabilities that appeared at birth (like cerebral palsy) or in very early childhood (various forms of muscular dystrophy and polio, aka infantile paralysis). Some polio survivors were in iron lungs before portable ventilators were invented, and many child polio victims were abandoned by their families and left in institutions.
I met a very remarkable woman at a fundraiser last September. She came with her son who is now in his mid-30s; he was diagnosed with a form of muscular dystrophy at age 3, when his pediatrician noticed he was clumsy and not coordinated the way he should have been at his age. Today, this man is an attorney who works for the city government, but not without a mom who fought for his rights every step of the way in a pre-ADA (Americans with Disabilities Act) world. She would not let his elementary school "dump" him in a special education class full of students with mental disabilities. He became the first student in New York City to be "mainstreamed." He graduated from college and law school. This mother says, "I only did what any mother would have done." Newsflash: I don't think my own mother would have had the strength to be the trailblazer this mother was. And even today, my dad says all the time to me, "You can't (do that)."
Anyway, as I said before, this woman is remarkable. But she commented to me at one point in our conversation: "You will never know what it's like to be a disabled child. You are lucky to have had a life before disability." I agree. I will never know what it's like to be bussed to a school over an hour away from home, in a minibus full of kids in wheelchairs who have to be dropped off in different neighborhoods, because there is only one handicap-accessible school in a whole borough. Then again, disabled children today will never know that, either. The post-ADA world is much better in the way of education.
Therein lies the comparison to my African-American colleague's son. Children today with disabilities haven't lived through "the struggles" of their predecessors. Neither have I. I never had to deal with as many businesses and buildings that I couldn't enter because of inaccessibility; nor have I had the experience of being stuck on my block because there were no "curb cuts" or even forcibly homebound because I could not get out of my building.
Nor will I ever know what it's like to be shunned by other children, whose mommies pull them away in the playground, as if disabilities were contagious. Not to mention that able-bodied kids are bullied every minute if they are "different" in other ways. Able-bodied children have troubles too, just different ones.
At the last meeting I attended at Concepts, some of my fellow board members were commenting about the new director of the Mayor's Office for People with Disabilities, saying that he wouldn't be as effective as his predecessor, because the predecessor had been blind from birth and the new man in the job has not been disabled his whole life. The man sitting next to me (who is disabled from birth) then said, "There's a big difference between someone who has been disabled his whole life and someone who hasn't," and the woman sitting next to him (also disabled all her life) nodded her head.
Is it fair to compare situations like this? Sometimes. Like when I watch those infomercials from St. Jude's Children's Hospital where Marlo Thomas introduces us to babies and little children going through cancer treatments, I think, "There's nothing worse than this, especially if they die. There is no loss worse than watching a child suffering and then burying a child." And yes, having a disabled child is the toughest, especially before the ADA.
It doesn't mean I can't be effective as a spokesperson. And should it have been a criterion when choosing the MOPD director, that the successful candidate be disabled from birth or childhood, in order to empathize?
This blog originally was posted on February 14, 2013.
About the Author
I live in Queens, N.Y., with my foster bunny Chelsea. I am a product of Depression-era parents, who brought me up with good, wholesome middle-class Jewish values on a steady diet of Chinese food and non-cable TV. All things considered, I came out OK, except that I am neurologically disabled since 2004 when I was diagnosed with ALS, or Lou Gehrig's disease. This caused me to finally "sit still and shut up," something people have been begging me to do all my life. So I write. The rest is history.
Fern's blog is titled is Forced To Sit Still and Shut Up — Life Before and During ALS.
Editor's note: Fern Cohen's living arrangement is described in Living Independently with ALS.